Revisiting isolation an often overlooked topic in Parkinson’s : by Dr. De Leon

A month ago, I read that as the new year rung in several Parkinson’s patients chose to take their own life. I can only imagine the devastation one must feel to decide to go through with something like this….I was extremely saddened by these events ….wondering where the friends and family were and at what point does one loose all Hope?

So, I thought I would revisit the topic of stigma in PD that I touched upon a few months ago.

From my years of practice, I recall many patients becoming extremely more withdrawn from society due to the physical impediments like decrease mobility, excessive drooling, increase hypophonia ( low-soft voice ) causing individuals to become increasingly socially embarrassed. This reminded me of how PD can be both socially and emotionally isolating. A lot of people that I have met over the years have been afraid to say they had this illness fearing public scrutiny. So, they chose social isolation or minimal contact with others in potentially embarrassing or humiliating situations like dinner parties.
They were afraid of chocking, spilling food & drinks due to tremors or DYSKENESIAs.

People sometimes are afraid as being judged incompetent or drunk due to poor gait, slurred speech or questioning one’s handwriting each time due to micrographia or severe tremors.
What about struggling to get money or credit cards when they need to make a purchase or pay for dinner?

According, to Dr. Julio F Angulo: ” shame is embarrassment felt in private.”
So, no wonder our self esteem begins to erode if we do not surround ourselves with people that love us, support us, and understand our shortcomings…we live in constant dislike and loathing of ourselves and begin to hate and blame our condition and best way to get rid of this fear & shame is eliminate the culprit! Hence, there is an increase risk of suicide in Parkinson’s rarely ever talked about.

But, I say that this does not have to be the case…first of all we as individuals have to realize that all of us embarrass ourselves at one time or another whether ill or not. And that our biggest critic is our selves, other people don’t pay nearly as much attention to our faults and weakness as we might think…they are too busy worrying about their own faults, difficulties, challenges and own prejudices.

Although, is no doubt that having Parkinson’s presents daily opportunities for embarrassing situations, the negative feelings it conjures up should not be pushed down and suppressed but rather discussed with other Parkinson patients. But, primarily they should be discussed with ones own physician or healthcare provider. This needs to be done as soon as first negative feeling arises or sense of shame begins to take root or even when you notice a change in your behavior. For instance, although you might enjoy the company of others you might suddenly find yourself making excuses to avoid social situations.

Your doctor can help you find the right solution which involves a wide array of medical treatments like psychotherapy.
Antidepressants can also play a role in the treatment of these symptoms. Some methods which might be suggested include desensitization, thought stopping, role playing just to name a few.
But, although all these things can be helpful, the main thing that will keep someone from feeling sad, blue and at their wits end is friendship, love, connection to others like ourselves…and above all FAITH!

So, let us not forget to reach out to one another….

I leave you with these words of inspiration..
“dig deep.look within. it’s all there inside you.
Except sometimes…it is not.
Everybody has days when all
The digging deep only turns up mud.
And that’s when you hand over the shovel.
You reach out. You let somebody give you
What you can’t mine for yourself.”

From BE Inspi(RED): words of hope and courage.


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